Saturday, February 2, 2013

Mourning: New Beginnings

Autism sucks. I don’t mean this in a colloquial, loose way
of speaking. I mean this in the way that black holes suck. Black holes—dying
stars—pull light, space, time, and dreams into a single hypothetical point and
they crush everything.

I’m writing this in a hotel room in downtown Milwaukee. My
wife checked me in yesterday because she could see—even if I could not—that I
needed to get away. To get away from the 3-hours of sleep a night. To get away
from random screams that could be words but for some neural-gastrointestinal-immunological
quirk. To get away from the hours of my son literally crawling the walls as I
sit in impotence and despair. To get away from autism, even if only for two
days and two nights.

Last night I did not work. I did not read the vast list of
books I live in terror of not finishing before my PhD exams—a valid fear as I
scramble to teach, sleep when I can, and care for my “severely autistic” (the
child-psychologist and pediatricians’ term) child.

I watched TV and I cried.

I cried at Hallmark commercials. I cried at the saccharine
Disney adverts. I cried at the Food Network. My wife called me and thought I kept
dropping the call because I could not speak.

I was mourning.

Maybe this is why autism dads run. At work, at home, within
our larger families, within a culture of “Kick-Ass Autism Moms,” we are not
allowed to mourn. It took me a random staycation and television-induced
breakdown to realize this and to wonder: “what does it mean to mourn?”

***

Mourning is about transition. It is a movement from one
state of affairs to another that is somehow less. It is a period often governed
by rules and customs. This periodicity, these structures, are seemingly
designed to help aid the transition.

It is sanctioned grief and it is necessary. It gets one
through.

But there is no mourning with autism. Especially not for
fathers.

Ours is a culture of compartmentalization where male anguish
is not met with compassion but with scorn.

This silences us.

Our children still live. They stand in front of us. They are
different, but they are there. But our hopes for them, our dreams of righting
the elisions and mistakes of our fathers, of being more for our children, slip
away as we sit in psychologist or pediatrician’s office.

But we mustn’t speak of this.

Autism culture—rightly—focuses on concentrating not on who
your child could have been, but on who your child is: difference not
deficiency. It is a culture of optimism, a culture of fierceness that fights
for our children’s recognition by schools, society, our larger families. I
believe in this culture, but I wasn’t ready for it. It took me time. I needed
to mourn, to release the anguish that comes whenever our visions of our lives
create dissonance with the reality of our lives.

There are no mechanisms for men. We cannot speak with one
another. We cannot speak with our larger families. We feel racked by guilt as
we look at our wives and just can’t pull it together, can’t be strong in the
ways they need us to be.

We self-destruct.

Drink. Smoke. Cheat. Scream. Run.

We need to mourn. We need to talk. We need to be allowed to
feel what we feel so that we can be who we need to be and who we want to
become. Denying, silencing, being normative—this helps no-one.

***

Mourning is about transition.

I’m transitioning now. That’s what these words are about. I
will move on. I will become a “Kick-Ass Autism Dad.” For my autistic son, my
neurotypical son, my wife, my larger family, I will move forward. For other
autism dads, I will move forward, will say the things that we shouldn’t say so
that maybe one more dad can hear another voice and can mourn as he should, not
as permission to live in despair, but as acknowledgment that things are
different than we first imagined.

This blog is an attempt, then, to transition and to help
other autism dads transition, to encourage them to speak, to feel, to mourn. I
do this in the hope that we can stop running. I do this in the hope that we can
let go of our previous pictures of fatherhood, and become the loving, strong,
fierce fathers that our children and families need us to be.

I am in awe of your honesty and courage, Adam. What you are saying seems universal to me and goes beyond autism. It is such a blessing that you and Jamie can describe these very difficult things so well. It has really helped me in working with special needs children and their parents. Thank you!!

Blessings to you and your family as you grow into becoming a "kick ass autism dad". I think you're off to a great start! Each day is a fresh start...a new beginning. Let yesterday go because you can't change it now......

Bless your heart, yours and your whole family's. My grandson, here, with me is autistic. We went into the kitchen to dance at my son's wedding as the band and the people were too loud for him. He was 3. He is 7 1/2 now. He is a happy boy. We have learned to make adjustments for him, and he is making progress. He will always be autistic, of course. That is who he is. Any new place is trying. He prefers the same things, but we must do new things...so we go slowly and aware of his needs. He has a good life. So do we. It is a different one from what we expected. My daughter never expected her husband would leave, for one thing. But my husband and I live with her and we homeschool this son and another one. Life is a joy.

Kudos! Most of the "manly men" of this world are no man at all. Real men cry. Real men feel. Real men will do whatever it takes for their family. We need more real men in this world. It's nice to know my husband is not alone.

Adam- I am a professor in Indiana and the Ed Director of the Indiana Writers Center and a mom to a kiddo with severe CP (also hate that word, severe). My dissertation was on the joys of being a special needs moms although certainly I have done my share of research and living the challenges. A colleague and I are now creating an edited anthology. Someone submitting to the text shared your blog. I want to begin talking with dads. I do not see an email on this post site. Could you possibly send me an email at ljones2@bsu.edu. I would love to speak with you about ideas and perhaps even collaboration. thanks! Darolyn "Lyn" jones